How to care for yourself when you’re a carer of children with complex learning disabilities

Gemma is a mother of six children under thirteen years old. She has two boys with autism and an adopted daughter with Down’s syndrome. She works as a coach for women caring for special-needs children and blogs on 3principles6kids.com. In a previous life, Gemma worked as a teacher.

What is the first thing you say to women struggling with the demands of looking after learning disabled children with complex needs?

Many times women may feel they are being selfish if they do anything to look after themselves. Saving themselves is considered unacceptable. Your child’s needs are seen as more important than your own, especially if it’s a longed-for child, or if your child has had medical emergencies or legal battles for provision. A mother may think it’s morally wrong to put her own needs first. But it all starts with yourself and accepting what you can accept and to realize what is out of your hands. Your child’s behaviour, the provision available or your child’s needs are in many cases out of your hands. You need to look inside yourself and decide for yourself what is possible and feasible to change in your life at that moment, and what you will have to accept.

You are balancing ALL the pieces of your life; your relationship with the partner, your other children, your housing, your job, all the parts of your life. When you have a child with special needs, this can become your entire existence. There are times when it is appropriate, but you have to be 100% clear to yourself, about what is really true, and what is just social obligation or social expectation. Ask yourself what is “I must” and what is “I should”, and be very clear about the difference. Think about all the threads in your life, and decide what is negotiable and what is non-negotiable for me. For example, I realized that I had to give up accepting Shabbos invitations because it was too stressful with all of us. On the other hand, I won’t give up on having a quiet coffee with my husband in a coffee shop once a week.

Who and how do I ask for help?

The first person to ask is your husband. In the real world, lots of men don’t participate with the childcare and women are left holding the reins. Men might believe it’s not their problem and women might believe they can’t hold their husband to account, but neither of those things is true. Have a frank discussion with your partner, maybe with mediation.

Ask for help from the system, parents are not always aware of their legal rights. Norwood and other professional bodies can signpost you to the full extent of your legal rights.

Ask for help from your wider family circle. Siblings, grandparents and in-laws can be asked to help and not in an ad hoc way. The difference that makes a real difference is a formal arrangement that you can count on regularly without having to ask for it every time. It works better for everyone involved because mums don’t have to feel bad about asking all the time. She can count on the help and look forward to it. Try to make it as formal as possible. It also helps the wider family feeling put upon. They know it’s just once a week or once a month. There needs to be good boundaries around these issues. You have to proactively and specifically ask for the help you need.

How do I help myself?

Don’t spend your life beating your head against a brick wall. If you reach an impenetrable road block, don’t beat yourself up with the idea of “should” (They should or he should etc.). The idea of fair and not-fair is a massive red-herring, and it’s not helpful. Disappointments, injustices and failures are fundamentally a part of life. It’s a hard thing to swallow. But it’s a blind alley to spend your life crying over what could have been or what should have been. Nearly 100% of the assumptions we make about the world are not really true. For example, it’s not true that you have to soldier on regardless of what life throws at you without showing that you are vulnerable. It’s not true that you have no right to ask for help. It’s not true that there is a gold standard of parenting that you must achieve at all times.

Our kids have to learn to make do and mend too. They have to learn to cope when things aren’t ideal. The biggest saving grace is to take a lot of time to cultivate good relationships. Not to be reactive and to develop siege mentality. It all comes down to self-care and to avoid getting into a state where no one can reach you. You need to step back, have some wider perspective and see other people’s motivation.

Find people who understand. Norwood’s Rainbow Group was a life-saver for me. Every week I had an hour and a half of emotional and practical support, and the chance to learn from other parents, while the children were safely cared for.

Get to know yourself. Pull out a few things that are meaningful to you. Identify the small, relatively inexpensive things that you can look forward to. Every woman has different ones. But put it in your diary and commit to doing it. Know what drives you crazy and work around that to protect yourself. Forgive yourself and have compassion for yourself. You are going to lose it sometimes. That is just the nature of life.